“We don’t do dementia” identifying barriers to help-seeking for memory problems among Black African and Caribbean British communities.

CLAHRC researchers have heard first-hand perceptions and beliefs among Black adults that prevent them from approaching their GP when they have concerns about memory problems – an early indicator of dementia.

Focus groups and interviews revealed five main beliefs and perceptions preventing people’s seeking help for dementia:
• Forgetfulness is not indicative of dementia
• Dementia is not an illness affecting Black communities
• Memory problems are not important enough to seek medical help
• Fear of lifestyle changes
• Confidentiality, privacy and family duty

The study comprised semi-structured focus – groups and interviews, recruiting 50 participants across a range of age groups and socioeconomic backgrounds.

Harry De Jesus

Harry is CLAHRC Research Fellow and a Senior Research Nurse working for the North Thames Clinical Research Network. His clinical background is in paediatric/neonatal intensive care and clinical research. He completed his BSc in Nursing with magna cum laude honours from the University of Santo Tomas in the Philippines. He has completed an MRes in Clinical Practice and was awarded a distinction for his thesis on self management of children with IBD. As part of his dissemination of his results, Crohn’s and Colitis Foundation of America awarded him a conference grant to present his poster on the American Advances in IBD conference.

Harry’s passion is to use participatory methodologies that listens to children’s voices using developmentally appropriate interview methods. Currently, he is spending a year on developing a PhD proposal investigating paediatric fatigue among young people with IBD.

Dipesh Patel

Dipesh Patel is a post-doctoral Advanced Orthoptist working at Moorfields Eye Hospital. His one-year CLAHRC HEE NCEL fellowship will be spent investigating factors affecting treatment outcomes in children with amblyopia (lazy eye).

Dipesh has been an Orthoptist for 10 years, and has previously researched visual field testing in children with glaucoma and neuro-ophthalmic disease.

Lucie Hogger

Lucie Hogger is Clinical Lead Speech and Language Therapist at Whittington Health and working with adults with acquired communication and swallowing disorders. She is spending one year as a CLAHRC HEE NCEL pre-doctoral fellow exploring the interactions between people living with dementia who take multiple medications and their health care professionals as part of the APOLLO-MM project http://www.polypharmacy.org.uk/.

Lucie has 10 years of experience working in the NHS and completed an MSc in Neuroscience and Communication at UCL in 2017. Her interests are in discourse analysis, neurological disorders and rehabilitation.

Dr Rachel Muir

Rachel Muir is a CLAHRC HEE NCEL post-doctoral Fellow and the Senior Matron for the NIHR Clinical Research Facility at UCLH. Her clinical background is in Critical Care, Accident and Emergency and Clinical Research, and she has a PhD in Social Sciences. Rachel is interested in knowledge mobilisation, arts based participatory methodologies, and patient experience in clinical trials. Rachel was awarded an international travel scholarship by the Florence Nightingale Foundation in 2013/2014 to visit Harvard, Toronto, and McGill in Canada to learn from innovative participatory projects to improve patient experience, and she is currently developing applications for post-doctoral funding as part of her CLAHRC HEE NCEL fellowship.

Imogen Skene

Imogen Skene is spending a year as a CLAHRC HEE NCEL pre-doctoral fellow. Her research will focus on informed consent & recruitment to clinical studies in the Emergency Department setting, and is linked to the CLAHRC’s Methodological Innovation theme. Imogen is currently a Senior Clinical Research Nurse in the Emergency Department at Barts Health NHS Trust.

Imogen obtained her BSc Adult Nursing at the University of Southampton and her MRes Clinical Research at City University London. Her MRes focused on trauma patients experience of care in the Emergency Department. She has also worked as an emergency nurse in Australia, New Zealand and the UK.

Dr John Robson

Longstanding interest in quality improvement and cardiovascular disease
• Chair NICE guideline 2008 on lipids and CVD risk estimation
• Co-author of QRisk and QDiabetes scores
• UCLP and Tower Hamlets CCG CVD lead
• QMUL Clinical Effectiveness Group lead
• Evaluation of the NHS health Check programme
• Support and evaluation with colleagues, of Tower Hamlets managed practice networks that propelled Tower Hamlets CCG from the bottom quintile of performance in 2008 to one of the national top performers in 2013.

Currently working with UCLP across a number of CCGs on quality improvement in atrial fibrillation and other cardiovascular disease. He also supports work with the Clinical Effectiveness Group and its primary care database to develop information systems that support a range of studies in quality improvement including antibiotic prescribing, earlier breast cancer detection, domestic violence, testing for HIV and TB, diabetes and liver disease.

Clinical Effectiveness Group: http://blizard.qmul.ac.uk/ceg-home.html